Several psychological and emotional aspects have been identified in people with diabetic foot disease (DFD). Currently, the scope of evidence on the topic is unclear. The aim of this scoping review is to identify and map the literature on psychological and emotional aspects of DFD. A systematic search was conducted on the 6th of May 2024, in MEDLINE, Embase, CINAHL and PsycInfo. Search results were screened based on predefined eligibility criteria. Data charting followed predefined extraction sheets, adapted for quantitative or qualitative studies. Out of 1,838 unique records identified from the database search and 1,819 from backwards citation search, 118 studies were deemed eligible for inclusion. Five categories of foot outcomes were identified. Qualitative studies revealed psychological and emotional impacts, primarily through individual interviews and various methods of analysis. Quantitative studies reported 25 different psychological and emotional concepts, utilizing 53 distinct tools. Most common concepts were depression, anxiety, and illness perception. Existing research on psychological and emotional aspects of DFD is diverse, using a wide variety of study designs, concepts, and tools. Most studies focus on quantitative psychological factors. This highlights the need for further exploration of other relevant aspects to enhance patient support.
A key component of realist evaluation is the development of initial programme theories. However, methods for developing initial programme theories are often underreported and there is limited guidance on how to construct initial programme theories based on exploratory qualitative data. In this article, we attend to these gaps by describing the development of initial programme theories for a realist evaluation of an intervention to support adults in adapting to life with type 1 diabetes. Our development of initial programme theories was based on literature related to the intervention, creative writing sessions, qualitative data from a feasibility study of the intervention, and input from stakeholders. The stakeholders included healthcare professionals delivering the intervention, an advisory group of the realist evaluation study involving people with diabetes and healthcare professionals, and a realist research peer support group. We applied a retroductive analysis approach to identify causal insights related to the intervention and develop initial programme theories. The initial programme theories were shared with the stakeholders which led to further refinement of the theories. We grouped the final initial programme theories into ten categories which illustrate the connections between contexts, mechanisms, and outcomes of the intervention. Based on our process of developing initial programme theories, we suggest using qualitative data to construct and refine programme theories although the data may not have been collected with a realist evaluation perspective. Furthermore, we encourage using visual aids to engage stakeholders in programme theory building and suggest that researchers adapt their approach to engage stakeholders according to the different stakeholder groups involved.
Over the past three decades, the concept of diabetes distress has played a central role in legitimising the emotional burdens of living with diabetes without pathologising them. Diabetes distress has helped foreground the frustrations, worries, and exhaustion associated with the ongoing demands of self-management and interactions with healthcare systems, and it has provided an important counterweight to purely biomedical models of care. However, while clinically useful, diabetes distress primarily captures emotional responses linked to burden, effort, and perceived threat. It may not fully encompass the quieter, cumulative, and more existential dimensions of emotional life that unfold across the long course of living with diabetes. In this conceptual article, we introduce loss and grief as a complementary lens for understanding these aspects of experience. Drawing on the Integrative Process Model of Loss and Grief (IPM), originally developed within bereavement research, we explore how living with diabetes involves ongoing and often ambiguous losses that affect bodily trust, identity, social participation, imagined futures, and meaning. The IPM conceptualises grief as a dynamic, integrative process unfolding across five interrelated dimensions: physical, emotional, cognitive, social, and spiritual. Rather than treating grief as a time-limited response to a discrete event, the model emphasises adaptation to cumulative and enduring forms of loss, making it particularly relevant to chronic illness. We do not propose grief as an alternative to diabetes distress. Instead, we argue that distress and grief represent overlapping but distinct perspectives on the same lived reality. Diabetes distress foregrounds the pressures and emotional load of self-management, while a grief-informed perspective highlights processes of adaptation, meaning-making, and identity renegotiation over time. Placing these perspectives together allows for a more textured understanding of emotional life with diabetes, including experiences that may not register in screening tools or routine clinical encounters.
BACKGROUND AND AIMS:Diabetic peripheral neuropathy (DPN) and neuropathic pain are associated with various psychosocial factors, but the effect of diabetes distress remains underexplored. This study examines the associations between diabetes distress, DPN, and neuropathic pain. METHODS:A cross-sectional analysis on participants with type 2 diabetes from The Maastricht Study was conducted. Diabetes distress was assessed with the PAID-20 questionnaire and categorized as low (score < 16), moderate (score 17-39), and high (score ≥ 40). Neuropathic pain was measured with the DN4 questionnaire, while DPN was clinically assessed through vibration perception threshold. Logistic regression analyses on the outcomes DPN only, neuropathic pain, and both DPN and pain were conducted, adjusted for sociodemographic (age, sex, education) and clinical characteristics (insulin use, HbA1c, depression). RESULTS:1418 participants were included (median age: 64 years, 68.4% male). Moderate and high diabetes distress were observed in 22.5% and 4.8% of participants. Moderate (adjusted OR: 1.95; 95% CI: 1.37-2.75) and high distress (adjusted OR: 3.64; 95% CI: 1.97-6.63) were associated with the presence of neuropathic pain, but not with DPN alone. INTERPRETATION:Diabetes distress is strongly associated with neuropathic pain but not with DPN. These findings suggest that individuals with neuropathic pain may benefit from psychosocial screening and support.
AIM:The potential implementation of early type 1 diabetes (T1D) detection pathways, encompassing autoantibody screening and longitudinal monitoring, raises important psychosocial considerations for ethical, person-centred care. This review summarises evidence on the psychosocial impact of early T1D detection, identifying key evidence gaps and recommendations for integrating psychosocial support. METHODS:A semi-structured narrative review was conducted using PubMed-indexed international peer-reviewed literature, complemented by experiential insights from an interdisciplinary authorship team. RESULTS:Broader Health screening literature emphasises that individuals' values, beliefs about chance, severity and controllability, alongside sociocultural context, shape decision making and coping. Early T1D detection introduces inherent uncertainty regarding timing and clinical progression. Despite a limited evidence base, largely focused on parents and lacking tailored person-reported outcome measures (PROMs), studies suggest a transient increase in negative emotional responses (e.g., anxiety, depressive symptoms, distress). Individual variation appears linked to screening outcome, prior experiences with T1D and tolerance for uncertainty. Effective, stigma-free communication and psychosocial support delivered by family-oriented professionals can facilitate informed, autonomous decision making. Mental health specialists play a key role in developing behaviourally informed protocols for care and communication, training care teams and providing targeted support for families experiencing persistent distress. Community involvement in the design, testing and evaluation of these communication tools, models of care and development of PROMs are essential for acceptability and equity. CONCLUSION:Integrating psychological monitoring and care is a critical component of the early T1D detection pathway. Contextually relevant and co-designed information, support strategies and PROMs are needed to help families make informed decisions and navigate uncertainties.
BackgroundPsychosocial challenges related to adult-onset type 1 diabetes are not systematically addressed in routine diabetes care. The Living with and Adapting to DiabetEs pRogramme (LADDER) was developed to support psychosocial adaptation to diabetes through two distinct interventions: 1) one-to-one consultations, and 2) group sessions. The LADDER interventions were tested in Denmark and the UK to evaluate the feasibility of 1) the research processes; 2) the delivery of the intervention; 3) collection of psychosocial and clinical outcomes and perceived benefits of participation; and to 4) identify key areas for improvement of the interventions.MethodsWe aimed to examine the feasibility of the one-to-one consultations via a controlled design with either non-random (Denmark) or random allocation (UK) to intervention or usual care and the group sessions via a wait-list randomised trial (UK). Psychosocial outcomes were collected through questionnaires, and clinical outcomes were obtained from electronic records. A concurrent process evaluation was conducted through interviews with participants and healthcare professionals.ResultsThe recruitment target was reached in Denmark. Due to a lower-than-expected number of participants, randomisation was abandoned in the UK. Questionnaire response rates were low, and clinical data were difficult to obtain. Due to uncontrolled study designs, small sample sizes, and high questionnaire attrition, quantitative comparisons between intervention and control groups were not feasible. Qualitative findings suggested that the LADDER interventions may support psychosocial adaptation by facilitating reflection, articulation of concerns, and shared understanding within supportive clinical and peer contexts.ConclusionConducting an evaluation of the LADDER interventions through a controlled study was not feasible, likely due to small study populations at each site, combined with changes in clinical working following COVID-19. We suggest using a realist evaluation approach for a future larger study to explore what aspects of LADDER works, for whom and in which contexts.
AIM:To gain insights into the experience of adults with type 1 diabetes (T1D) using a systematic screening method to assess and address diabetes distress (DD) in nurse-led routine diabetes care. METHODS:DD screening in 30 consultations incorporated the Type 1 Diabetes Distress Scale-7 (T1-DDS-7), a short-form, validated instrument capturing the most common sources of DD, and a dialogue model to support diabetes specialist nurses (DSNs) in addressing DD. Semi-structured interviews were conducted with 30 adults with T1D who participated in DD screening. Interviews were analysed using thematic text condensation. RESULTS:Participant mean age and diabetes duration were 47 and 26 years, respectively. Sixteen participants reported moderate to high DD (total T1-DDS-7 score ≥14). Participants described positive experiences discussing DD with DSNs during annual consultations. Three themes emerged from interviews: (1) an eye-opener that enhanced emotional support in adults with T1D, (2) meaningful conversations and personalised diabetes care and (3) increased satisfaction and engagement with diabetes care in adults with T1D. CONCLUSION:Systematically assessing and addressing DD in clinical consultations was both useful and acceptable. Participants reported high levels of satisfaction with the screening method, noting that DSNs used open-ended questions and active listening skills to support managing DD, reflecting good fidelity with the dialogue model. Future research should explore methods for implementing the screening tools to ensure consistent detection of DD in adults with T1D during consultations as well as timely referral to effective interventions.
Introduction and Objective: The prevalence of diabetes distress in adults with type 2 diabetes (T2D) is high yet interventions aiming to prevent diabetes distress are lacking. Our study aimed to evaluate the feasibility and acceptability of an intervention to facilitate conversations about diabetes distress in group-based patient education. Methods: Four visual dialogue tools aiming to increase awareness of and encourage peer-conversations about psychosocial aspects of living with diabetes and diabetes distress were used in 13 group-based patient education sessions for adults with T2D. Participants (n=159) and health professionals (HPs) (n=30) evaluated the tools via a questionnaire with space for free text responses. Free text responses were analysed thematically, other data descriptively. Results: Most adults with T2D (87%) and HPs (85%) found that the dialogue tools were helpful or very helpful in exploring and expressing psychosocial aspects of diabetes. Adults with T2D highlighted their ability to support sharing among peers that normalized common experiences and challenges. HPs found that the tools provided invaluable support to the peer conversations by enabling participants to articulate their thoughts and experiences. Some HPs found it challenging to introduce the tools to participants and emphasized the need for training and support during implementation. Conclusion: Systematic integration of visual dialogue tools is feasible and acceptable and can support adults with T2D to have conversations about psychosocial aspects of living with diabetes and diabetes distress in group-based patient education provided by rehabilitation services. HPs need training and support in facilitating the tools. Further research is needed to assess the long-term effects of the tools in terms of their ability to prevent diabetes distress in a larger study. M. Due-Christensen: Stock/Shareholder; Novo Nordisk. R. Pals: None. M. Madsen: None. M. Bejerholm: None. H.N. Grønbæk: Stock/Shareholder; Novo Nordisk. Speaker's Bureau; Novo Nordisk. V. Stenov: None. B. Cleal: None. C. Glümer: None.
Unsuccessful peer support interventions rarely receive detailed ethnographic attention. The article examines a peer support intervention part of a randomised controlled trial designed to provide people with type 2 diabetes socio-emotional support while adopting self-care technology. The trial concluded that the intervention yielded no benefits. This article insists on 'failure' as an analytical opening with potential for intervention research. Ethnographic fieldwork was conducted in Denmark between January 2020 and June 2022. The ethnographic material comprises intervention audio recordings and observations involving 15 participants, as well as follow-up interviews. Using the concept of 'lifeworld' to understand participants' perspectives and 'the will to improve' to interpret the intervention's framework, we unpack the tensions and awkwardness that permeated meetings. Comprehending why the intervention's activities failed to engage participants meaningfully, we highlight how it framed diabetes as a socio-emotional problem in need of fixing, thereby problematising living with the illness, contrasting participants' shared endeavours to de-problematise the experience within the intervention. The intervention offered a version of their lives with values and priorities that did not resonate and was thereby unsuccessful in bringing the aimed-for outcomes. Challenging the will to improve, we propose the 'lifeworlding' of future health interventions, prioritising lived experiences in the very framing of interventions.
This review finds that co-existing type 2 diabetes (T2D) and binge eating disorder (BED) may have significant individual and societal costs due to health and socioeconomic consequences. BED may worsen T2D management, potentially raising HbA1c levels and complicating treatment. ≤ 25% of T2D patients have BED, yet research and treatment are limited. Studies indicate that T2D treatment can trigger or worsen binge eating due to the focus on diet, exercise, and weight. Effective screening and tailored, evidence-based interventions are needed for this dual diagnosis to improve physical and psychosocial health outcomes.
To examine how the ‘social’ is conceptualised and mobilised within psychosocial diabetes research, and to consider how disciplinary perspectives shape the field. We conducted a narrative review focusing on psychology, sociology and anthropology. Using a purposive and iterative approach, we synthesised influential theoretical and empirical works that foreground social aspects of diabetes, tracing conceptual histories, disciplinary assumptions and methodological orientations. Psychology has largely defined the psychosocial in terms of individual behaviours, coping and distress, situating social factors as contextual influences. Sociology has repositioned the social by focusing on structures, inequalities, stigma and institutional practices. Anthropology has illuminated cultural meanings, lived experiences and structural violence, showing how diabetes is embedded in broader histories and contexts. Together, these perspectives demonstrate that the psychosocial is not a fixed combination of two domains but a hybrid, negotiated space. We argue that Mode 2 knowledge production—transdisciplinary, collaborative and problem-oriented—offers a productive frame for rethinking psychosocial diabetes research. Recognising the psychosocial as a hybrid construct underscores the need for conceptual and methodological pluralism. By embedding social science perspectives alongside psychological and clinical approaches, psychosocial diabetes research can generate knowledge that is inclusive, contextually grounded and socially robust. This orientation promises to strengthen research relevance, support participatory approaches and enrich responses to the complex realities of living with diabetes.
AIMS:To examine how the 'social' is conceptualised and mobilised within psychosocial diabetes research, and to consider how disciplinary perspectives shape the field. METHODS:We conducted a narrative review focusing on psychology, sociology and anthropology. Using a purposive and iterative approach, we synthesised influential theoretical and empirical works that foreground social aspects of diabetes, tracing conceptual histories, disciplinary assumptions and methodological orientations. RESULTS:Psychology has largely defined the psychosocial in terms of individual behaviours, coping and distress, situating social factors as contextual influences. Sociology has repositioned the social by focusing on structures, inequalities, stigma and institutional practices. Anthropology has illuminated cultural meanings, lived experiences and structural violence, showing how diabetes is embedded in broader histories and contexts. Together, these perspectives demonstrate that the psychosocial is not a fixed combination of two domains but a hybrid, negotiated space. We argue that Mode 2 knowledge production-transdisciplinary, collaborative and problem-oriented-offers a productive frame for rethinking psychosocial diabetes research. CONCLUSIONS:Recognising the psychosocial as a hybrid construct underscores the need for conceptual and methodological pluralism. By embedding social science perspectives alongside psychological and clinical approaches, psychosocial diabetes research can generate knowledge that is inclusive, contextually grounded and socially robust. This orientation promises to strengthen research relevance, support participatory approaches and enrich responses to the complex realities of living with diabetes.
AIM:To explore the illness and treatment burden, mental well-being, and received support for illness management among people with schizophrenia and type 2 diabetes. MATERIALS AND METHODS:62 Danish adults recruited from psychiatric outpatient clinics participated in this cross-sectional study using a questionnaire compiled for this specific purpose. The questionnaire included measures of burden of illness and treatment (daily impact of diabetes and schizophrenia, treatment burden, diabetes empowerment), mental well-being (general well-being and diabetes distress), and social relations and support (general and illness-specific support). Descriptive analyses of survey data were conducted. RESULTS:Participants reported daily negative impact from living with schizophrenia and diabetes on their physical health, emotional well-being, sleep, and feelings about their future. However, this negative impact was higher from schizophrenia than type 2 diabetes. 55% of all participants reported high treatment burden, and 74% reported low to moderate diabetes empowerment. Approximately 30% reported high levels of diabetes distress, and 49% reported low general well-being. The support for schizophrenia mainly came from mental health professionals, care coordinators, and family and friends, while diabetes support mainly came from general practitioners and family and friends. CONCLUSIONS:Living with coexisting schizophrenia and type 2 diabetes often involves a high burden of illness and treatment, low diabetes empowerment, high diabetes distress and low general well-being. This study highlights a need for engaging mental health professionals, care coordinators, family and friends in the daily management of coexisting schizophrenia and diabetes in future interventional studies and clinical practice.
AIM:To describe the challenges and strategies involved in recruiting adults to a cross-sectional survey study on psychosocial health and support, with individuals with schizophrenia and type 2 diabetes as the case. MATERIALS AND METHODS:This descriptive study tracked the recruitment process for a Danish survey study in a register, systematically synthesising all relevant information. This included details on how eligible patients were identified and invited to the study and their reasons for declining. Two recruitment strategies were employed: (1) Recruitment via mental health professionals in psychiatric outpatient clinics in Region Zealand, and (2) Recruitment via phone calls to eligible patients. Descriptive analyses of the recruitment data were conducted. RESULTS:Three challenges were identified and described: (1) Challenges in identifying eligible patients, (2) Challenges in having mental health professionals to recruit participants, and (3) Patients' inability to complete the questionnaire. The first two challenges were addressed through practical approaches: (1) Identifying eligible patients via electronic health records and medication types, and (2) Directly inviting patients via phone calls from a member of the research team. No additional initiatives were implemented to address the third challenge. Approximately 15% of all eligible patients declined to participate, indicating a high willingness to participate among the remaining individuals. CONCLUSIONS:Exploring various challenges was crucial for understanding the difficulties in recruiting this population, initiating new approaches to address these challenges, and recognising the high willingness to participate. Greater emphasis should be placed on patients' rights to make their own decisions regarding participation in research.
Background Although commercially developed automated insulin delivery (AID) systems have recently been approved and become available in a limited number of countries, they are not universally available, accessible, or affordable. Therefore, open-source AID systems, cocreated by an online community of people with diabetes and their families behind the hashtag #WeAreNotWaiting, have become increasingly popular. Objective This study focused on examining the lived experiences, physical and emotional health implications of people with diabetes following the initiation of open-source AID systems, their perceived challenges, and their sources of support, which have not been explored in the existing literature. Methods We collected data from 383 participants across 29 countries through 2 sets of open-ended questions in a web-based survey on their experience of building and using open-source AID systems. Narratives were thematically analyzed, and a coding framework was identified through iterative alignment. Results Participants consistently reported improvements in glycemia, physical health, sleep quality, emotional impact on everyday life, and quality of life. Knowledge of open-source AID systems was largely obtained through the #WeAreNotWaiting community, which was also the primary source of practical and emotional support. The acquisition of the components to build an open-source AID system and the technical setup were sometimes problematic. Conclusions The #WeAreNotWaiting movement represents a primary example of how informed and connected patients proactively address their unmet needs, provide peer support to each other, and obtain results through impactful, user-driven solutions. Alongside providing evidence on the safety and efficacy of open-source AID systems, this qualitative analysis helps in understanding how patients’ experiences and benefits range from psychosocial improvements to a reduction in the burden of managing diabetes. International Registered Report Identifier (IRRID) RR2-10.2196/15368